Toolkit Resources
Recommended Resources
The Michigan Medicine Scleroderma Program is a multidisciplinary group of caregivers, scientists, and clinical researchers dedicated to advancing knowledge about scleroderma and related conditions.
University of Michigan-Michigan Medicine website for the Scleroderma Peer Mentor Program. Peer mentors are great because of the emotions you feel when initially diagnosed it may be helpful to someone else who has experienced the same diagnosis.
Website designed by the University of Michigan and University of New Mexico that teaches strategies for you to manage symptoms and advocate for yourself.
The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks. Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma.
Offering community support for other patients through social and fundraising events and informal education. Connect with other people with scleroderma. This group is led by Michigan Medicine scleroderma patient volunteers.
Keep those Scleroderma bodies moving, because yoga is for EVERY Scleroderma body - NO excuses!
This website provides answers to frequently asked questions that may come up during the first few months of your diagnosis.
This website provides some information on your diagnosis, treatment, and additional steps to take that have been found to be positive in the scleroderma diagnosis journey.
This website provides patients of all different ages and their testimonials. For those newly diagnosed, it may be overwhelming, but listening to others' stories of hope will assist with the diagnosis.
This website has various helpful resources, including understanding scleroderma for family and loved ones and scleroderma for those diagnosed—various life hacks, symptom management, and how to make the most out of appointments.
Provides information on multiple rheumatologic diseases, including scleroderma. There are articles from patients with various types of autoimmune diseases and links to research, financial assistance resources, how to be involved in advocacy, etc.
This website provides articles regarding family planning with chronic illness. This website should not serve as a substitute for medical advice from your physicians. There are helpful tips for parents in the article series written by an occupational therapist with rheumatoid arthritis - "How to Protect your Body while Parenting a Baby."
You can search for recently completed and newly funded research studies on scleroderma that may be recruiting participants by going to clinicaltrials.gov and including systemic sclerosis/scleroderma or your specific condition.
Please note that this list is not exhaustive as resources are constantly evolving. Last updated 09/22/2024